International Niemann–Pick Disease Alliance

INPDA Spotlight on VML France Niemann Pick Group

Sometimes in such a big organisation as the INPDA, our various member groups can be overshadowed, but we want to show just how important each and every member group is in making the INPDA work. In the INPDA Spotlight this month is VML France Niemann Pick Group. In the post below we learn more about their wonderful organisation, including their history, the opportunities they have had and the challenges they have faced.

Tell us how your organization got started?

VML (Vaincre les maladies Lysosomales) is a patient organization for Lysosomal Diseases. It’s an umbrella group for Niemann Pick diseases. Founded in 1990 by parents of sick children and adult patients, to make their voices heard, and to pull investments in scientific and medical research. Recognized as being of public utility, VML is the only structure in France allowing all those affected by one of the 53 lysosomal diseases including Niemann Pick.

“Rare but not Alone” is our Slogan.

What are some of the opportunities that your organization has?

Since 1992, the year of the first funding, more than 330 projects have been identified and supported (over 6 million euros invested) to understand each lysosomal disease and study the therapeutic possibilities. As such, we have contributed to important discoveries to better understand our diseases and thereby to better treat them. VML enters into an evaluation and selection procedure involving international experts and scientific and medical advice.

What are some of the biggest challenges your organization faces?

Bringing together energies to raise funds and continue to be the leading organization in funding research. We are the link between researchers and all those who want to act to support research (patient, families, supporters, etc.). Annual VML Family meeting VML Niemann Pick group meeting in Lyon.

Annual VML Family meeting.

Are there government resources and support available to those in your community?

VML is a private non-profit association recognized as being of public utility. The resources are derived exclusively from the generosity of the public.

Are there gaps you see currently or emerging in the support government gives your community?

As of today there is no real financial support from the government. Our Aim would be to have other additional support from private or public funds.

What would be your one wish for your organization in the years ahead?

Positive results on ongoing and future researches for treatments. Increase impact of the organization in the field of research and health networks.

Is there anything else you would like to share about your organization?

The association is one of the very few organizations to have obtained the two approvals which in France aim to guarantee donors as much as possible of the good management and good practices of organizations appealing to the generosity of the public: IDEAS (since 2010) and Committee of the Charter of giving in confidence (since 2014).

VML Values are Solidarity, Commitment and Rigor

To learn more about VML and their activities you can visit the VML website and facebook.

A huge thank you to VML France Niemann Pick Group for taking part in our INPDA Spotlight series and providing an insight into their fantastic organisation. If you want to learn more about VML France Niemann Pick Group email, take a look at their website here,  or see what they have been up to lately by checking them out on Facebook. If you are interested in learning more about the member group that represents you, why not check out our ‘About’ page for a list of the organisations that are part of the INPDA? Stay tuned for another INPDA Spotlight next month!

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